Carmen’s NF Story

Carmen’s NF Story

Carmen was born with a lump on her upper lip. At the time, not much was known about neurofibromatosis, and it was not until she reached adulthood that she received an official diagnosis.

Although Carmen had a “normal” childhood, she knew she was different to other children she grew up with.

“Being different from my brother and my sisters, I was discriminated,” says Carmen.

“I also had a black mark on my bottom, and living in the village where we used to run around with no clothes on, the other kids would see and often teased me.”

After graduating from high school Carmen moved to Manila where she was fortunate to find a job as a receptionist at the Austrian Consulate.

“At this time I was already 26 years old but still had no other lumps that could be seen, other than the one on my upper lip and a couple on my back that I had removed. I was enjoying my freedom and happy life,” says Carmen.

At 36 Carmen met her husband and moved to Australia, but she quickly noticed small lumps starting to appear on her face and arm. A visit to her local GP for an unrelated condition revealed Carmen had NF1.

“Being innocent and not knowing much about it, it did not bother me at all,” says Carmen.

“I got on with my life, and my husband and I decided not to have children because the doctor told us that the condition was hereditary.”

By the age of 40 the lumps began growing all over Carmen’s body, but she was fortunate to have a supportive husband, and focused instead on the positive aspects in her life.

“I studied a course in Positive Thinking and I stayed that way,” says Carmen.

“I’m also a dressmaker by profession so I can make any dress that will cover my lumps, but the lumps are not my main problem in life, and luckily I had a husband who was very understanding and not ashamed to take me out.”

In 2004 Carmen’s husband sadly passed away, but three years after she met a gentleman who became a source of strength and support for Carmen.

“Despite my looks he wasn’t ashamed to go out with me and introduce me to his friends,” says Carmen.

“One day he showed me a crisp hundred dollar bill and told me I was worth more than that. He said, ‘No matter what you look like, you are you, and you are the best person I have ever met.’”

Sadly he passed away in 2011 on Christmas Day.

Carmen has been fortunate with the support and understanding she has received since being diagnosed with NF, and she hopes others, too, can find the strength to overcome their own NF challenges.

“Live your life the way you want it to be, and don’t worry about what people think of you,” says Carmen. “You are you and there’s nothing much you can do to change that.”